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The Journey to Becoming a Parent Advocate

Abstract: The parent of a child with deafblindness shares her experience in becoming a parent leader and advocating for change.

Keywords: Family Wisdom, family leadership, advocacy, leadership, family organization

I have recently been feeling a sense of awe about the words, “you have power as a parent,” and what it means to be a “Parent Advocate”.

When we first found out about our precious baby’s inability to see, and then a few months later his inability to hear, we were (and probably still are) in shock. For every family the news of any imperfection is overwhelming. Then you start having therapy sessions with Early Childhood Intervention (ECI) which you cling to like butter on toast! Then you find out about other services or groups that are more specific to your child, like The Texas Deafblind Project, and you just start calling until you find a way for you and your family to cope with the daily challenges life brings. Well that about sums up being a parent of a person with special needs. (This is a major understatement—wouldn’t you agree?)

That is how I feel about the term “Parent Advocate.” You will hear it over and over with regard to so many different areas. For me it started in ECI. They would tell me I will learn how to be a “Parent Advocate,” and I would just stare and think, “What does that mean?” Why do people put so much value to that term “Parent Advocate”? I found it quite annoying that people would say this to me with such a nonchalant expectation, and yet I had no idea what it meant.

Well, I have been “in the business” of Special Needs for 10.5 years (my deafblind child’s age), and I think I only recently caught on to some of what they really meant. At first I thought it was being at every therapy session and school meeting; constantly searching the internet (after everyone was in bed) to stay up on all the related research; reading every newsletter and just about anything you can find that is relative to your situation; keeping it all filed and organized; and contacting any services that are related and that can help. Doing this, and all the while trying to maintain a household, be a supportive spouse, don’t forget to parent the other children, and oh, if you work, do a good job at that too.

So, what I realize today is that there are differing levels or steps of being a Parent Advocate. Getting through the first phase of dealing with the news and getting services started is an important step in becoming a Parent Advocate, because you have to start somewhere.

I have been told so many things over the years and read so much, there is no way I could retain all of it. So, in some ways we do filter through all of the information and advice to find what we can cope with. For us, there was a definite stage of filtering through the information and attending seminars while trying to maintain a routine home for the family. We were in this stage for a while. Suddenly, it dawned on me that I do know my family’s needs and my deafblind son’s needs as well. Although, I admit I do (and did) not know everything, I knew enough to speak-up and be heard. I realized I had to be a voice for him and let others know what is important to him. As the “expert” on your child, you have that ability to express to the school (or whomever) what his or her abilities, likes, and needs are. You know what makes your child happy or upset – you are the expert on your child. This is what brings you forward to being a Parent Advocate.

Suddenly I found that I was taking a chance and speaking out to say what my child’s needs are, and people listened!

For example, I knew he needed physical play for both his emotional and physical well being. It was imperative to me that he had it during his school day or we would be going down a very bad road of behavior issues. I took a chance and approached the school principal about a “Sensory Motor Lab” of some sort so he could play in a safe environment. Unfortunately, due to his blindness and caution on his part, he does not just run and play outside on his own, and he does not currently have enough communication to participate in regular PE. Amazingly, the principal had also been addressed by the Health Fitness Director of the school district about potentially being a pilot school for something called “Action Based Learning.”

Let me tell you, this “Action Based Learning” is a wonderful brain research based physical play program that develops the whole child. It focuses on physical actions that target certain parts of the brain for development. It was originally established to help regular education students with their mathematics and academics, but it also develops the vestibular system and so much more! You can find out more about it at .

The three of us met and devised a plan for how we were going to make this Action Based Sensory Motor Lab a reality. I had said I would do the fund-raising to cover the equipment—which I am sure helped—but I think it would still have happened, just with less equipment. By working together we have been able to make it great for all the students in the school. Now our school district is even considering it for other schools too!

It really does mean a lot when to the school system when a parent feels strongly and is compelled to work with them in determining the means to get things done!

It has been a nice journey so far, finding out what being a “Parent Advocate” would mean for me. While I had mostly been overwhelmed with my child’s diagnosis, wondering what life would be like for him as well as us, been through our “survival and coping stage”, realized we are the “experts” on our son, and now realize we are “Parent Advocates.” What a journey…and it is nowhere near over!

Next, we (that includes you) will have to figure out the legislative processes to further improve the lives of our children. If we do not speak up for them, no one will!

So, good luck to all of you, from the new and old members of DBMAT! You are a Parent Advocate, because you do have the power to affect your child’s surroundings at home and at school, or wherever they may be in life!

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